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Dementia forces changes in lifestyle that are depressing. The disease process in dementia leads to depression. And overmedication can make this potentially fatal problem even worse. But caregivers can take positive action.

Early in 2014, the gifted comedian Robin Williams was diagnosed with Lewy body disease, which usually progresses to Lewy body dementia. A few months later, he took his life. We will never know whether the beloved comic succumbed to despair or to his disease. Dementia can cause depression that leads to suicide.  And suicide in dementia is shockingly common.

In the United States, older adults make up 12 percent of the population but account for 18 percent of suicides. Some researchers believe that suicide rates in the elderly may be underreported by 40 percent or more. "Silent suicide" by starvation, dehydration, overdose, and "accidents" are not reported as suicide but may result from suicidal intent. 

Depression is a primary risk factor for suicide. Studies find that up to 63 percent of people with dementia in nursing care are diagnosed as depressed. Up to 83 percent of people with dementia in hospital care are depressed. Many will look for ways to leave their suffering that escape detection and that are not thwarter by family, friends, and professional caregivers.

The answer for depression in dementia isn't an antidepressant medication, although antidepressant medication sometimes is necessary. Depression in dementia is a difficult issue, and it's not something you can "fix". However, there are positive steps for caregivers that make a difference.

Recognize the symptoms of depression

Someone who has dementia may not be able to tell you "I am depressed". You may have to infer their emotional state from their actions. 

  • Extended periods of crying and tearfulness may indicate depression. (Brief periods of inappropriate crying may be a symptom of pseudobulbar affect disorder, which is not a form of dementia.)
  • Unexplained weight loss may be a sign of depression. Or it may be a sign of problems with chewing and swallowing, digestive issues, allergies, or poor food preparation.
  • Changes in sleep habits herald depression. Both insomnia and excessive sleepiness are signs of depression. But they may also be caused by noise, odors, and interruptions during the night. 
  • Fatigue often accompanies depression. As with other possible signs of depression, fatigue is symptomatic of multiple possible health conditions. But it is part of a syndrome of depression.
  • Agitation and irritation increase during mild to moderate depression. If wandering, verbal confrontation, and flares of temper occur without their usual triggers, consider depression.
  • Unusual collections of complaints are possible during depression. An accumulation of "not quite treatable" complaints is both depressing and indicative of depression.
  • Apathy and lack of interest are common in depression. Loss of interest in prized possessions, favorite foods, and eagerly anticipated activities are signs of depression. One "test" for depression is to arrange an event that is usually eagerly anticipated, and then observe the patient's reaction. For instance, if someone who has dementia always watches a particular sports team on television each and every weekend, not wanting to watch the game may be a sign of depression. Grandparents who don't want to see grandchildren may be depressed. And patients who enjoy being "cantankerous" who are strangely quiet may be depressed.

Collaborate with other caregivers

Chances are that you aren't the only person who has noticed signs of depression. If is important to share your observations with the team of caregivers who deal with your loved on a daily basis, and it is good to bring up the issue with the doctor. (Screening for depression is part of every encounter with a doctor in many medical practices.) If someone who has dementia is anxious when a caregiver leaves the house or the nursing facility at the end of their shift, be sure to speak with that person to find out what is going on that makes the patient want them to stay. They may be doing something that relieves the patient's depression.

The Cornell Screen for Depression in Dementia is a set of questions to be answered by the patient and also by an informant who observes them on a regular basis. The test requires about half an hour to answer and score. The screening considers physical changes (loss of appetite, loss of weight, fatigue), mood shifts (anxiety, irritability, sadness), behavioral changes (agitation, retardation/slow movements, loss of interest, multiple complaints), sleep disturbances, and ideation (talk of suicide, pessimism, delusions). Because the test uses both the patient and an informant, it usually gives meaningful results. This test has been validated and found useful for screening for depression in Korean people.

Don't forget to take care of yourself

One study found that 12 percent of family members of people who have dementia develop major depression in the course of their loved one's illness. The emotional, physical, and financial stresses of taking care of a chronically disabled loved one who will not recover can be devastating. Be sure to schedule time for your own recreation and rest. And if you yourself develop thoughts of your own suicide, see professional help. There is no shame in being helped.

  • Alphs L, Brashear HR, Chappell P, Conwell Y, Dubrava S, Khin NA, Kozauer N, Hartley DM, Miller DS, Schindler RJ, Siemers ER, Stewart M, Yaffe K. Considerations for the assessment of suicidal ideation and behavior in older adults with cognitive decline and dementia.Alzheimers Dement (N Y). 2016 Feb 23.2(1):48-59. doi: 10.1016/j.trci.2016.02.001. eCollection 2016 Jan. Review. PMID: 29067293.
  • Conejero I, Navucet S, Keller J, Olié E, Courtet P, Gabelle A. A Complex Relationship Between Suicide, Dementia, and Amyloid: A Narrative Review. Front Neurosci. 2018 Jun 1.12:371. doi: 10.3389/fnins.2018.00371. eCollection 2018. PMID: 29910709.
  • Joling KJ, O'Dwyer ST, Hertogh CMPM, van Hout HPJ. The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years. Int J Geriatr Psychiatry. 2018 Feb.33(2):263-270. doi: 10.1002/gps.4708. Epub 2017 Apr 5. PMID: 28379646.
  • Photo courtesy of SteadyHealth

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